Friday, July 22, 2011

waterslides , miracles and cookies







How can I begin to explain how in love we are with Eliana ? :0) How is it possible that just when you think you can not love any deeper it goes deeper still ?
I guess I am in a prosaic mood :0)
Today we spend the heat wave at the lake. Eliana swam like there was no tomorrow .
She loves the water . Last week we were at a birthday pool party . Eliana went down the water slide THIRTY times in a row. There were 2 slides next to each other , so each time I was able to hold her hand.
The moment she reached the pool she clapped for herself and took a deep bow for everybody who was watching. Hilarious.

Yesterday we had a small miracle. Since we are moving everything around in our house ( Will's studio upstairs , my harps to the living room and the living room downstairs ) I am on Craigs list quit a bit.
To make a long story short ; I sold our couch . When the buyers came in ( mother , father and 3 year old child ) I was floored.
I saw the little girl and "knew" . Eliana saw the little girl and "knew" too. She grabbed her hands , looked in her eyes smiling with instant recognition and started dancing and singing. No THEY started dancing and singing simultaneous.

You see ?
They had a very similar story , the girl, Brianne,also has a severe heart defect, multiple surgeries , brush with death etc.
The mother also had a life saving surgery at the moment her baby had surgery ( she was leaking spinal fluid and nobody would believe her either )
They also had miracles. Their grate Dane woke them up when the baby was on the verge of death.

We all sat down and talked for hours. It's crazy to say , but it felt like Christmas.

The most miraculous Christmassy feeling caused by the joy in both girls. I still get shivers thinking of that moment they looked into each others eyes and smiled.

Who knows , maybe this girl will end up going to Doc Hanley, too ?

It seems God is still working in that way.
Eliana's playmate Julia , will have surgery with Doc Hanley Sept 1.
I have been making Julia's mother crazy about Doc Hanley not specifically knowing why. Julia has HLHS , a totally different severe heart defect.
It turns out Doc Hanley can do Julia's surgery ( the third in a row of three ) without using the heart/lung bypass . Something they do almost everywhere else. This saves her pulmonary artery , crucial for her survival.

Please keep Julia in your prayers , she is so special and so dear to us. She is so very intelligent and sweet and indescribable angelic.
We have sad news about Eliana's cardiologist. Her little 7 year old girl has a recurrence of brain cancer. Please pray for her , too. Her name is Julia also.

Life seems sometimes so unfair, but then it brings you to the bare, bare beauty of life , too.

Julia knows when her mom is sad . Julia doesn't get to go to church , nor is she exposed a lot to biblical jargon. But her mom told me Julia hugged her 3 times saying" baby Jesus."

I am not making this up ! :0) Brianne saw a picture of an angel and told her mother she had seen one.
Eliana told me she saw angels singing in a blue light. ( and here stops the seriousness )
When I asked her what they were singing about she said " cookies"!!!!!! :0)

Oh well , enough for now.

PS Baby Amberlyn is home and doing amazing. She will go back for hopefully a full repair in a couple of months depending how fast her vessels grow.

Sunday, May 15, 2011

Update Eliana



I realized I didn't update on Eliana ! Our own sweet daughter . The love of our lives.
About 2 weeks ago we came back from Stanford. Eliana had a check-up catherization one year after her life saving surgery by Doc Hanley.
All looks as perfect as can be !
The part they tried to fix back home closed of , but she developed dual flow.
What a miracle .
She doesn't need anymore surgeries or catherizations until the conduit change . And that might be 5 , 10 or even 15 years down the road ! We hardly can/dare believe it.
We are so thankful.
The strange thing is that NOW all our fear comes out.
For 2 years we had to keep ourselves together like crazy . Now that all is ok ....we expect the next drama.....
Images of Eliana on ECMO.......sentences like "Suffered cathastrophic stroke " " Everybody has to die sometimes " and " You will burn many bridges " All spoken by doctors at home keep flooding our minds.
It will take a while , I think , for it to die down...
We did have a certain normalcy before going to CA for the catherization. We even had times we forgot about Eliana's chd ....but going and hearing Eliana scream "go, go , go away " when we had to lay her down on the operating table for the catherization brought everything back.
Also ; fighting for other children and waiting during their surgeries draws out deep emotions. I know we have to start living a normal life again for and with Eliana . And we will. The most vivid memories will go to sleep again for a while ....
And I will not go overboard on trying to save as many babies as I can.....
It will and does happen on its own already. Many times miraculously. Maybe the Angels on the picture taken at the Stanford Campus have something to do with this ! :0)

Finally I am not alone screaming in the desert !


Here is a post from facebook 1 in 100.
I am so happy to read this.
Finally I am not the only one screaming in the desert.....
The internet is a powerful tool. Hopefully more and more parents can get life saving information !

Post 1 in 100


1in100 Parental Oddity #20: This is about as direct a post as you will ever see here, so bear with me. Part of why 1in100 exists is to connect families. The first section created on 1in100.org was Medical Rockstars. Why? Because it was a place to list the physicians, medical teams and hospitals that have had the most impressive outcomes, particularly with the worst possible cases of CHD. So here it is: please, take the time to do your research and listen to the counsel of others. These families have walked down the CHD road. They aren't replacing doctors, but can offer help and wisdom on a specific diagnosis and courses of care. And they will share the good, the bad and the ugly. There are babies all around this country receiving medical care for critical heart defects that just are not in the right place. The more you know, the more you can do. Second, third and fourth opinions. They matter. #1in100ost 1in 1000

Image taken Febr. 2010 Stanford University Campus. Rodin Gate of Hell.
Will and I had our own private thoughts encountering this stunning creation.

Doc Hanley in the news.


http://www.businesswire.com/news/home/20110509005426/en/Famed-Surgeon-Repair-Kennadee%E2%80%99s-Heart-%E2%80%9COne-Complex

Here is the article !

In the picture is Doc Hanley ho;ding Eliana 10 days after her life saving surgery 2010.

May 09, 2011 09:00 AM Eastern Daylight Time
For Famed Surgeon, Repair of Kennadee’s Heart “One of my Most Complex Ever”

Dr. Frank Hanley Fixes Hearts That Can’t Be Fixed
Kennadee Albright plans her first birthday on May 21

STANFORD, Calif.--(BUSINESS WIRE)--Don and Shawna Albright had almost lost hope.

“Without these surgeries, the prognosis for her long-term survival would be close to zero”

Eighteen weeks into Shawna's pregnancy, an ultrasound showed deadly, unfixable problems with their baby girl's heart. Two referrals and two echocardiograms later, doctors said there was no way the baby would survive her complex heart defects.

"They all said it would be best to terminate," said Shawna.

Devastated, the Albrights decided to seek one more opinion. This produced a breakthrough by way of a Seattle doctor: a referral to pediatric cardiothoracic surgeon Frank Hanley, MD, at Lucile Packard Children’s Hospital, where Hanley repairs congenital heart defects that other doctors won’t touch.

Soon Don and Shawna were traveling from Washington State to Palo Alto, Calif., joining a roster of families from locations such as South Africa, France and Germany who have turned to Hanley to save their children's lives.

"It was an amazing relief," said Don. "This was the first time we had even a one percent chance of saving our baby."

In May 2010, Shawna delivered baby Kennadee at Packard Children's so that Hanley and the hospital's expert neonatology and cardiology teams could care for her from birth. Hanley soon realized the tiny girl was one of the most complex patients he had ever seen. Some infants have serious defects inside the heart; others have a hard-to-repair malformation of the artery leading to the lungs. Kennadee's case was even worse.

"Kennadee had the '10 out of 10' pulmonary artery problem, but inside her heart she also had a complex defect that is a 9 or 10 out of 10 on the cardiac side of things," Hanley said. The list of Kennadee’s diagnoses overwhelmed the Albrights: congenitally corrected transposition of the great arteries, severe dextrocardia, pulmonary atresia, major aortopulmonary collateral arteries, an atrial septal defect and a ventricular septal defect.

"Dr. Hanley was the right surgeon for Kennadee because of the rarity of the combination of her heart defects," said Kimberly Krabill, MD, the pediatric and fetal cardiologist at Seattle's Swedish Medical Center who referred the Albrights to Hanley. "When families say, 'Who's the best surgeon in the U.S.?' I have to be honest with them," Krabill said. "Expertise- and results-wise, Dr. Hanley is one of the top surgeons in the U.S."

Hanley laid out a surgical strategy for the Albrights. “It would take three open-heart surgeries to achieve a complete repair,” he said.

Kennadee's first two operations repaired her blood vessel problem. She lacked a pulmonary artery, the large tube that carries blood from the heart to the lungs. Instead, she had many small heart-to-lung vessels widely scattered throughout her chest cavity. Her first surgery, a four-hour operation at age two weeks, allowed more blood to be pushed through these little vessels, prompting them to grow. It was a key step to prepare her for surgery number two.

The second operation, in September 2010 when Kennadee was four months old, was a marathon repair that Hanley, its pioneering inventor, has performed more than 500 times. This “unifocalization” procedure involved gathering the many small arteries found throughout her chest and bringing them together to construct a single large blood vessel that mimics the normal pulmonary artery. Then, an artificial heart valve was installed at the junction between the heart and the new artery. Hanley likens this surgery to gathering branches scattered around a field and building them into a tree trunk. The long, arduous procedure takes such stamina, focus and experience that very few surgeons attempt it.

Packard Children's Cardiovascular Intensive Care Unit director, Stephen Roth, MD, MPH, who also worked with Hanley when they were both on staff at Children's Hospital Boston, confirmed: "Frank Hanley is among the world's small group of elite pediatric cardiovascular surgeons".

As Hanley made clear to the Albrights, no two children have identical malformations, so every surgery is a unique challenge. But Kennadee's 10-hour unifocalization went smoothly and she healed extremely well.

After that, Hanley needed to fix the last of Kennadee's problems. In her heart condition, called "corrected transposition," the left and right sides of the heart have swapped jobs. Although this anatomical abnormality poses no immediate threat to a newborn's life, it puts long-term strain on the heart and lungs. If the condition is not treated, both organs will fail.

So, in her third surgery in March 2011, in a re-plumbing of Kennadee’s heart, Hanley performed an eight-hour "double switch" procedure on the then-10-month-old. He moved her blood vessels to the correct positions, finally allowing her blood to circulate on a normal path through the right side of her heart, her lungs, and the left side of her heart and then the rest of her body.

"Without these surgeries, the prognosis for her long-term survival would be close to zero," Hanley said. "Now, all of her cardiac and lung physiology is completely normal."

Shawna added that when it was all over, “Dr. Hanley was as thrilled as we were. He was so happy for us.” As she outgrows her artificial heart valve, Kennadee will need replacements, but she faces no other restrictions, and the valve replacements are relatively simple procedures.

And now, Kennadee is looking good, feeling good, playing peek-a-boo and planning to celebrate her first birthday on May 21, an event that once seemed unimaginable. Her personality is emerging, too.

"She's not shy," said Don. "She's a big flirt with everybody."

Looking back at their refusal to succumb to the worst of all diagnoses, Don and Shawna are beyond grateful to the doctors who never gave up. “We are forever thankful that Dr. Krabill knew about the amazing work of Dr. Hanley.” said Shawna, who offered what could be lifesaving advice for other families facing a seemingly hopeless situation.

“Keep looking and don’t give up,” said Shawna, who had been told repeatedly that there was no one who could help. “That’s how we found Dr. Hanley, and without him we wouldn't have our daughter.

Wednesday, May 4, 2011

Baby Amberlyn still doing fine !


Baby Amberlyn is still doing great !
She is still in ICU , but awake . Just like Eliana part of her lung collapsed , but that will be ok in no time ! I have gotten beautiful pictures of Amberlyn being held in her mothers arms. So many memories come flooding back.

This is an excerpt of what Amberlyn's mum just wrote me .

You were right about the hospital. It is beautiful and the drs and nurses are nothing less than amazing. It is so different that what I am used to! Its great. Thank you again so much for posting about dr hanley. If I hadn't have seen that post I would have never known about dr hanley and I don't know if amberlyn would have been able to survive another operation in d.c. have you thought about a lawyer for what happend to your daughter at the md hospital? I mean pain and suffering would be a reason by itself. What do you think?

Wednesday, April 27, 2011

Just heard the news !


Just heard the news !Baby Amberlyn's surgery went well !!
She is in the ICU right now . Will hear more later .
Have been praying every second of this day. Memories flooding back.
God works true miracles through Doc Frank Hanley's hands.

I will add a picture of Eliana right after surgery last Jan 27.
Seeing her then was like seeing a little angel in paradise compared to the ECMO she was on back home in MD.

Sunday, April 24, 2011

Baby Amberlyn is on her way to Doc Hanley THIS Easter day !!!

Baby Amberlyn is on her way to Doc Hanley THIS Easter day !!! 10 hours flying . Medical transport straight from East Coast to CA. The insurance( medicaid ) finally approved.First request was denied . Second request worked ,even though the surgeon at the hospital Amberlyn was at refused to cooperate and wrote that he actually had trained Doc Hanley... This is a HUGE miracle . Please pray for her and her family. The surgery will be this Wednesday.

Friday, April 1, 2011

saving baby Amberlyn .....baby number 4

Last week I felt the urge to post the following on my face book. ( see below /next post )

In response to this I talked to Amberlyn's mom.

Amberlyn's experience was very similar to Eliana's. ( Ecmo , failed surgeries etc,) Amberlyn was about to have her second surgery March 31 The docs had told her mother they were the best , but that they wouldn't be able to save Amberlyn's lung and that A.very well might die......

I begged Amberlyn's mom to send A.'s medical records to Doc Frank Hanley at Stanford . It was hard for her to even believe that Doc Hanley might be able to help her daughter when the docs here said they couldn't.

I told A.'s mom to also talk to 2 other mothers whose babies were send home to die and whose babies are alive and well because of Doc Hanley.

Well , she did talk to the 2 other mothers and she did send all A.'s medical records.

Doc Hanley just told her he can save her babies life and lung. He told her he had helped babies in much worse shape and that he was very confident that he could help her ! The same words he used talking to us when Eliana was almost given up... Eliana is singing and dancing as I am writing this.

I write this in the hope that more mothers in similar situations will read this.

My dream is that one day a docs loyalty to an institution doesn't go above the welfare/life of a child and that the docs will be able to refer patients to other institutions without being fired. That hospitals will work together instead of compete. ( in Michael's book "Walk on Water"you can read more about this )

I will post my facebook post in next post ( have trouble copying and pasting :0)

Thank you for reading this. Please spread the word !





POST Facebook





Message from baby James' mother

liljamesmommy · Pass a Note!

Posted 19 hours ago



We also found a miracle in Dr. Hanley at Stanford U in CA thanks to Astrid who already posted here. Our son was sent home to die according to docs in MD, but now there is lots of hope. We have actually moved to CA to have Dr. Hanley fix his heart. You have to check him out. The earlier you get here, the better. We waited 8 months too long and now our son is paying for it. Good luck!!



End quote.



Baby James had a full repair a month ago and he is home now !



The day after Eliana's first hospital found out we had send somebody to Hanley they called us and asked how our finances were and if we wanted to sit "around the table "........Not for a million dollars will we keep our mouths shut.



Soon Eliana will be able to give baby James a hug for the first time !

Praying many more babies will be saved.